We had our CT TR today with Dr Troup and he showed us the films from 7 mos ago to the one he had last Thursday and holy cow, what happened? His shunt is completely blocked! Dr Troup says, "Yep, we need to revise his shunt." Backing up a little bit...
Last night was HORRIBLE! He was up until after 3am, crying out and nothing made him comfortable. He finally fell asleep a little after 3am and after pretty much shoving me off the bed, my body hanging on the side like a thread and my head just bobbing off the side. Yes, my entire body hurt this morning. Boy, the things we do for our kids. Whatever made him sleep though, I was willing and able. So, tomorrow is the day. We have to be at Greenville Memorial by 11am and the surgery will start at 12:30p. He will stay overnight and Ron and I will be sleeping on the most uncomfortable bed/couch (if that's what you want to call it). I will miss Zach's graduation Thursday morning...sniffle, sniffle! Atleast his dad will be there and he can take lots of pictures for me. Speaking of graduation, I can't believe Zach will be in Middle School and I will have a Sophmore too. I guess that's where the gray hair is coming from?
Anyways.... I am hoping that this shunt will atleast last us a few years..that's all I'm asking, not too much to ask I don't think. =)
Well, please pray that everything goes well and we will make it home Thursday afternoon if all goes well! We love our Neuro Team in Greenville and have lots of faith that everything will go smoothly! Like Dr Troup says, "it's just like riding a bike in the park" (regarding the revision of shunts). Let's hope he doesn't fall off his bike tomorrow..atleast not on Landen's surgery! =)
Wish Landen luck and keep him in your prayers for the next few days!
Tuesday, May 31, 2011
Friday, May 27, 2011
ROUTINE CHECK UP
Landen had his routine 6 mos CT, Renal Ultrasound, and CMG yesterday. He did not tolerate the CT nor the US like I had hoped he would. You can see by the pictures below just how unhappy he was...even after he got in the toy chest. His Prelim. report on his US was the same as last one... no reflux from his bladder (which is great news)His CMG went well. His pressures are normal for a 13 mos old with SB and we are hoping his urine tests are fine also. Ron and I had a wonderful time at Shriners. We absolutely love Shriners and GMH. I have teased Ron recently about just moving to Greenville considering all of Landen's specialists are there. I wouldn't mind moving to Greenville and neither would Ron but the kids...that's another story. Lexi says there is NO WAY she is moving. Guess it looks like we will be traveling back and forth to Greenville for now.
After we got home from a long day of tests and driving, I got a call from Dr Troup's office wanting to make a F/U visit from the CT done today. My response was, "We have the Spina Bifida Clinic in August, can we just wait to see him then?" Sure she said and we hung up. About 30 minutes later she called me back and said, "Dr Troup wants to see you next Tuesday at 1:45p in his office". I've been in the medical field for 13 yrs so I know that if a Dr calls back to schedule something ALOT sooner...it's never good news. So I asked her, "Is everything ok with his shunt? Was his CT normal?" She then said...."He may need a shunt revision and Dr Troup wants to talk to you about that." GREAT NEWS...Just what I wanted to hear! This will be his 3rd shunt and he's only 13 mos. What is going on here??? GEEEEEZZ, can he not get a break? On the other hand, thank goodness we will be going to Greenville Hospital for this one and not Levine's. I know he will be taken care of by Dr Troup and his wonderful Neuro team.
You can see by the pictures he hated the CT and the US!
Ok, so he looks pretty content during these pictures but he SCREAMED through most of
the tests!!!
That's it for now, please pray that Landen will do well during his next surgery (whenever that may be) and that this shunt will do what it is supposed to do and NOT malfunction and cause him to have to have yet another surgery!
After we got home from a long day of tests and driving, I got a call from Dr Troup's office wanting to make a F/U visit from the CT done today. My response was, "We have the Spina Bifida Clinic in August, can we just wait to see him then?" Sure she said and we hung up. About 30 minutes later she called me back and said, "Dr Troup wants to see you next Tuesday at 1:45p in his office". I've been in the medical field for 13 yrs so I know that if a Dr calls back to schedule something ALOT sooner...it's never good news. So I asked her, "Is everything ok with his shunt? Was his CT normal?" She then said...."He may need a shunt revision and Dr Troup wants to talk to you about that." GREAT NEWS...Just what I wanted to hear! This will be his 3rd shunt and he's only 13 mos. What is going on here??? GEEEEEZZ, can he not get a break? On the other hand, thank goodness we will be going to Greenville Hospital for this one and not Levine's. I know he will be taken care of by Dr Troup and his wonderful Neuro team.
You can see by the pictures he hated the CT and the US!
the tests!!!
Monday, May 23, 2011
REALITY CHECK AND NO SYMPATHY HERE!!!
This weekend was great! It was a laid back weekend with no obligations to be anywhere! We now have had 2 Sundays in a row where we can just come home after church, put our jammies on and watch tv, nap, eat, whatever we want to do and I LOVE IT!
Landen is getting so much better at army crawling and if you turn your head for just a second, there is no telling where he might be or what he might be getting in to. Recently he has become infactuated with pulling everything off the fireplace, he likes plug ins, and pulling lamp wires.(yeah, not safe)I guess it's time to baby proof some things!!
It's obvious that Landen is different than most babies. He doesn't crawl like a "normal" baby would, he isn't pulling up and walking like most 13 mos old, he doesn't eat ANY food other than baby cereal and stage 2 pears/peaches, he can't drink from a sippy cup, still drinks formula with added "Thick It"(so he doesn't choke), he will never use the bathroom like most children BUT... he is very smart in other ways. It has NEVER bothered me that Landen is different, I've never felt a tad bit sorry for him, and I've never felt even a little depressed or sad because he doesn't do what other children do his age. My son is different and he's wonderful, smart, so flippin' handsome, happy, determined, strong etc. But yesterday I had a sad moment where I wanted to cry but composed myself b/c I have NEVER felt sorry for him for any reason. Like I said, he is army crawling beautifully and when he wants something or he has his sights on something, he's going for it...even If I say "No No". Well yesterday he wanted to crawl into his bubbas room (he loves his bubba)Let me back up a tad bit. When Landen army crawls, he uses his left leg to help him but his right leg doesn't move at all and it just draggs behind him. =( (that is the sad part...tears)This isn't something that is new, we knew his right leg didn't work and he has no feeling from his bottom down)BUT.... as he was crawling, his Right leg got caught in a toy and he was dragging the toy behind him. He had no clue his foot was stuck in the toy. He had no clue he was dragging behind a toy. At that moment while watching him, a feeling of sadness came over me and my husband said "oh, that is so sad" which made it worse b/c I was on the verge of tears but...me being the strong person said "Oh, that's ok" and sorta laughed it off. My thoughts quickly forwarded to pre school and children picking at him b/c he is different or something similar happening to him while in school and children making fun of him. Then of course I started thinking "Home School" because NOBODY better make fun of my baby!( The whole momma bear kicked in) Anyways, this morning while working, I read this Flyer about Tim. Tim is/was a member of the Y and faithfully came to the gym. In Dec 2010, he was working in his yard, cutting away some branches off of a tree while standing on a ladder. The branch flung back and knocked him off the ladder. Long story short he broke his neck, his heart failed and needed a pace maker, he had 2 strokes due to swelling in the brain and he is now paralyzed from his neck down and uses his head, yes his head to operate his wheelchair. He is still up beat and happy. After I read that, and became a little emotional I thought to myself...and you were sad that Landen was dragging a toy with his Right foot that doesn't work???? What's your problem? So, I am thankful that Landen can move around in his own little way. We WILL overcome obstacles like this every day and I can only hope and pray that Landen will have the attitude that Tim does and he will never feel sorry for himself because he is different than others.
It's funny how my "almost" 13 mos old teaches me lots of things. Some days he teaches me patience, other days it may be determination but I think most days(as he gets older) he will teach me to accept whatever challenge he may be going through, and to be strong. Shouldn't I be teaching him that?
A letter to my sweet boy~
Dear Landen,
It's so hard for me to narrow down all the little things I love about you. It would be IMPOSSIBLE to list them all. Every "New" stage that you go through is my favorite, I love how you are fascinated by everything (like the spoons and spatulas I cook with or the pots and pans)I love when you accomplish new things, I love how you call for dadda but reach out for me, I love when you like to snuggle and just be rocked, I love how you search out for my necklace when you are tired and want to hold on to something, Oh how I love that you are a momma's boy...atleast for now...and I'm going to soak each and every minute of that up, I love most when no matter who is in the room, you search for me to make sure I am still there! I love how busy busy you have become and can't stay still. I love how you look at me and speak your own language. I love just who you are and wouldn't change anything for the world. You are my entire life and I love you with all of my heart and more! You are the sweetest thing since sliced bread. =) I can't get enough of you. You make my heart melt, my rainy days shine, and my heart skip a beat every time you love on me. When I rock you to sleep at night, after you have fallen fast asleep (and you start snoring..so cute by the way) I just look at you and wonder how on earth me and your daddy got so lucky? There is not a day that goes by that I don't thank God for you. You are my sunshine!!! ( This is his bedtime song that I sing to him every single night) I love you I love you I love you infinity.
Love always and forever...Your Mommy
I'm not a tree hugger, just a basketball post hugger.
He's smelling a stick before he puts it in his mouth
He's giving his little bear lots of love.
Landen is getting so much better at army crawling and if you turn your head for just a second, there is no telling where he might be or what he might be getting in to. Recently he has become infactuated with pulling everything off the fireplace, he likes plug ins, and pulling lamp wires.(yeah, not safe)I guess it's time to baby proof some things!!
It's obvious that Landen is different than most babies. He doesn't crawl like a "normal" baby would, he isn't pulling up and walking like most 13 mos old, he doesn't eat ANY food other than baby cereal and stage 2 pears/peaches, he can't drink from a sippy cup, still drinks formula with added "Thick It"(so he doesn't choke), he will never use the bathroom like most children BUT... he is very smart in other ways. It has NEVER bothered me that Landen is different, I've never felt a tad bit sorry for him, and I've never felt even a little depressed or sad because he doesn't do what other children do his age. My son is different and he's wonderful, smart, so flippin' handsome, happy, determined, strong etc. But yesterday I had a sad moment where I wanted to cry but composed myself b/c I have NEVER felt sorry for him for any reason. Like I said, he is army crawling beautifully and when he wants something or he has his sights on something, he's going for it...even If I say "No No". Well yesterday he wanted to crawl into his bubbas room (he loves his bubba)Let me back up a tad bit. When Landen army crawls, he uses his left leg to help him but his right leg doesn't move at all and it just draggs behind him. =( (that is the sad part...tears)This isn't something that is new, we knew his right leg didn't work and he has no feeling from his bottom down)BUT.... as he was crawling, his Right leg got caught in a toy and he was dragging the toy behind him. He had no clue his foot was stuck in the toy. He had no clue he was dragging behind a toy. At that moment while watching him, a feeling of sadness came over me and my husband said "oh, that is so sad" which made it worse b/c I was on the verge of tears but...me being the strong person said "Oh, that's ok" and sorta laughed it off. My thoughts quickly forwarded to pre school and children picking at him b/c he is different or something similar happening to him while in school and children making fun of him. Then of course I started thinking "Home School" because NOBODY better make fun of my baby!( The whole momma bear kicked in) Anyways, this morning while working, I read this Flyer about Tim. Tim is/was a member of the Y and faithfully came to the gym. In Dec 2010, he was working in his yard, cutting away some branches off of a tree while standing on a ladder. The branch flung back and knocked him off the ladder. Long story short he broke his neck, his heart failed and needed a pace maker, he had 2 strokes due to swelling in the brain and he is now paralyzed from his neck down and uses his head, yes his head to operate his wheelchair. He is still up beat and happy. After I read that, and became a little emotional I thought to myself...and you were sad that Landen was dragging a toy with his Right foot that doesn't work???? What's your problem? So, I am thankful that Landen can move around in his own little way. We WILL overcome obstacles like this every day and I can only hope and pray that Landen will have the attitude that Tim does and he will never feel sorry for himself because he is different than others.
It's funny how my "almost" 13 mos old teaches me lots of things. Some days he teaches me patience, other days it may be determination but I think most days(as he gets older) he will teach me to accept whatever challenge he may be going through, and to be strong. Shouldn't I be teaching him that?
A letter to my sweet boy~
Dear Landen,
It's so hard for me to narrow down all the little things I love about you. It would be IMPOSSIBLE to list them all. Every "New" stage that you go through is my favorite, I love how you are fascinated by everything (like the spoons and spatulas I cook with or the pots and pans)I love when you accomplish new things, I love how you call for dadda but reach out for me, I love when you like to snuggle and just be rocked, I love how you search out for my necklace when you are tired and want to hold on to something, Oh how I love that you are a momma's boy...atleast for now...and I'm going to soak each and every minute of that up, I love most when no matter who is in the room, you search for me to make sure I am still there! I love how busy busy you have become and can't stay still. I love how you look at me and speak your own language. I love just who you are and wouldn't change anything for the world. You are my entire life and I love you with all of my heart and more! You are the sweetest thing since sliced bread. =) I can't get enough of you. You make my heart melt, my rainy days shine, and my heart skip a beat every time you love on me. When I rock you to sleep at night, after you have fallen fast asleep (and you start snoring..so cute by the way) I just look at you and wonder how on earth me and your daddy got so lucky? There is not a day that goes by that I don't thank God for you. You are my sunshine!!! ( This is his bedtime song that I sing to him every single night) I love you I love you I love you infinity.
Love always and forever...Your Mommy
Wednesday, May 18, 2011
Monday, May 16, 2011
Nothing new today...
Today was pretty much a "non productive" day. I watched my sweet boy play with toys, put his sand bucket on his head and say "hat". Some days...ok, EVERY single day I watch my baby and just fall deeper in love with him(which by the way is hard to believe considering how much I love him). As I watch him smile and laugh at me and blow kisses, fake laugh, scream (because he can't speak the words he wants to say)I wonder HOW ON EARTH people CHOOSE to abort their baby...HOW? I am sooooo thankful to Landen's birth mother for giving him life! Although I am not Landen's Birth mother I am his mommy no matter what. I got this poem from a friends blog who not only has adopted but is going on that wonderful journey again.
In My Heart
Not flesh of my flesh,
Nor bone of my bone,
But still miraculously my own,
And don't forget for a single minute,
You didn't grow under my heart but in it.
Adoption is a beautiful thing. I can't find the words to explain it. It is pure love.
Today...my "non productive day", while Landen was napping, I looked on a few adoption websites that I OFTEN surfed while going through the adoption process before Landen. My heart ached as I looked through profiles and profiles and profiles of children just waiting to go to their forever homes. Which leads me to my rant and frustration....WHY SO FREAKIN EXPENSIVE TO ADOPT A CHILD THAT HAS BEEN THROWN AWAY BY HIS/HER PARENTS or abused,neglected,sexually abused,etc? It completely baffles me.
Another poem that my wonderful friend has on her blog is below too. What a beautiful poem. I pray that they will find their 2nd forever child soon!
KISSES IN THE WIND (The Waiting Child's Lullabye)
I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.
I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.
Now go outside and feel the breeze and let it touch your skin...
Because tonight, just as always, I blow you kisses in the wind.
May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.
Very soon, you'll have a family for real, not just pretend.
But for tonight, just as always, I blow you kisses in the wind.
May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I send to you each night.
That just brings tears to my eyes!
So today during my non productive day I send out prayers to those beautiful children just waiting for their forever families and to those individuals who are waiting to adopt their forever child. It is a long process, very expensive, and emotionally draining but OH SOOOOOO worth it in the end.
As I watch my beautiful son(with a yellow bucket on his head) I wonder how on earth I could ever live without him. He's amazing, beautiful,bright, funny, silly, handsome, full of energy, special, a son of God and MY SON! Adoption is beautiful and I pray that Ron and I will find a way to adopt again one day...sooner than later!
I'll leave you with a few pictures of my silly boy playing and putting his "hat" on.
Wednesday, May 4, 2011
FINALLY!
I finally got a call today about Landen's stander. It was shipped today and will be in the distributors hands by Friday and we will have it in OUR hands by the time we go to physical therapy next Wednesday!!! FINALLY!!! He was fitted for this stander the first week of December 2010 and we are just now getting it. That's crazy.
Other news....He's finally learning to "army crawl". We've tried to record him so we can post it on you tube and facebook but every time we get the camera out he stops. He's trying his hardest to pull up on things but his upper body just isn't strong enough yet.
His birthday party was GREAT! We had a great time with family and friends. My friend Courtney made Landen a cake with no eggs and a whipped topping so he could just dig in but he didn't like the texture of it after he touched it. He ended up having a sucker instead of cake. Thanks anyways Courtney...we finished off the cake for him by Sunday. Also Landen got 2 car/wagons for his birthday and we decided to keep them both b/c he absolutely LOVES it! We have been on more rides around the neighborhood and in our yard looking at the fruit trees than we have the entire time we've lived in this house. We went to Zach's baseball game last night and I literally pushed him around in his car the entire game minus like 15 minutes so he could love on his pawpaw for a few minutes. =)
I HAD A VERY SCARY MOMENT YESTERDAY. After work we came home and had our usual cereal for breakfast and a bottle. After bath and a few minutes of playing with his birthday toys I started to rock him to sleep for a quick 20-30 minutes before we had to head to OT. As I was rocking him, his body went limp. Now I knew he was tired, but not that tired! I picked his head up and he was choking and turning blue. After several BEATS on the back, hard back rubs, and freaking completely out, scooping his mouth......he finally blew chunks ALL over the place. All over the rocking chair, floor, him, me (and all down my shirt) then he took a deep breath and laid his head on my shoulder for about 3 seconds before he started again! Needless to say I ran late for therapy and thanked the lord that I was right there when it happened b/c what would have happened if I wasn't with him? THIS IS THE REASON I DON'T LEAVE HIM WITH ANYONE ELSE NOR NEED BABY SITTERS! I rarely take my eyes off my son all day when I am home with him. If I have to go to the restroom, he's with me, if I have to take a shower, he goes to the bathroom and plays with his toys while I am in the shower...And if he eats something, I NEVER look away from him b/c he could choke at any minute. I think if I left him with someone even for an hr I would have a nervous breakdown wondering if he's choking and no one watching him. I have wonderful family members that would be tickled pink to watch Landen even for a few hrs but after that episode yesterday....Landen might be 12 before I leave him with ANYONE! Landen looks as healthy as any other baby and acts just like any other baby and without his braces on, you would NEVER think that Landen was special needs but the fact is, he is fragile!
Shriners F/U is coming up in a few weeks. May 26th he will be having a CMG (pretty sure he has a bladder infection even though we continue to take the antibiotic daily) he has a follow up CT on his head and he will be getting a renal scan too. Busy busy day for monkey. I better take lots of suckers! =) Oh, and I can't forget a few extra change of clothes b/c it never fails that he poops every where when we go to Greenville.
Here's a few pictures from the birthday party, him at the park and his new car.
(We all had matching Team Landen shirts with a #1 on the back.)
Other news....He's finally learning to "army crawl". We've tried to record him so we can post it on you tube and facebook but every time we get the camera out he stops. He's trying his hardest to pull up on things but his upper body just isn't strong enough yet.
His birthday party was GREAT! We had a great time with family and friends. My friend Courtney made Landen a cake with no eggs and a whipped topping so he could just dig in but he didn't like the texture of it after he touched it. He ended up having a sucker instead of cake. Thanks anyways Courtney...we finished off the cake for him by Sunday. Also Landen got 2 car/wagons for his birthday and we decided to keep them both b/c he absolutely LOVES it! We have been on more rides around the neighborhood and in our yard looking at the fruit trees than we have the entire time we've lived in this house. We went to Zach's baseball game last night and I literally pushed him around in his car the entire game minus like 15 minutes so he could love on his pawpaw for a few minutes. =)
I HAD A VERY SCARY MOMENT YESTERDAY. After work we came home and had our usual cereal for breakfast and a bottle. After bath and a few minutes of playing with his birthday toys I started to rock him to sleep for a quick 20-30 minutes before we had to head to OT. As I was rocking him, his body went limp. Now I knew he was tired, but not that tired! I picked his head up and he was choking and turning blue. After several BEATS on the back, hard back rubs, and freaking completely out, scooping his mouth......he finally blew chunks ALL over the place. All over the rocking chair, floor, him, me (and all down my shirt) then he took a deep breath and laid his head on my shoulder for about 3 seconds before he started again! Needless to say I ran late for therapy and thanked the lord that I was right there when it happened b/c what would have happened if I wasn't with him? THIS IS THE REASON I DON'T LEAVE HIM WITH ANYONE ELSE NOR NEED BABY SITTERS! I rarely take my eyes off my son all day when I am home with him. If I have to go to the restroom, he's with me, if I have to take a shower, he goes to the bathroom and plays with his toys while I am in the shower...And if he eats something, I NEVER look away from him b/c he could choke at any minute. I think if I left him with someone even for an hr I would have a nervous breakdown wondering if he's choking and no one watching him. I have wonderful family members that would be tickled pink to watch Landen even for a few hrs but after that episode yesterday....Landen might be 12 before I leave him with ANYONE! Landen looks as healthy as any other baby and acts just like any other baby and without his braces on, you would NEVER think that Landen was special needs but the fact is, he is fragile!
Shriners F/U is coming up in a few weeks. May 26th he will be having a CMG (pretty sure he has a bladder infection even though we continue to take the antibiotic daily) he has a follow up CT on his head and he will be getting a renal scan too. Busy busy day for monkey. I better take lots of suckers! =) Oh, and I can't forget a few extra change of clothes b/c it never fails that he poops every where when we go to Greenville.
Here's a few pictures from the birthday party, him at the park and his new car.
(We all had matching Team Landen shirts with a #1 on the back.)
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